CHF and recovery. Off meds?

[mike95765]

I was diagnosed with CHF, dialated LV cardiomyopathy about 14 months ago. EF was 15-20%, I started on Coreg and Diovan and they inplanted an ICD. Currently I'm on Coreg CR 40mg 1x day and Diovan 80mg 2x a day. My EF has shown steady improvement and the muga scan at 12 months was EF of 45%. I am fully expecting EF to get back to normal within 6 more months. My cardiologist has said he would support removing the ICD if I fully recovered and was stable for a period of time, at least 6 months. However, he has said I need to continue on the Coreg and Diovan permanently and that the latest studies support this approach. "Lowering medications can lead to a relapse and a second recovery from CHF is much more difficult". I really don't want to continue with these meds forever, even though the side affects are mostly minor, I'm 40 yo male and otherwise in good health. I run and exercise regularly now. Any experience with removing medications after CHF recovery


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[namelessme]

I have idiopathic cardiomyopathy, although it was caught earlier than yours was -- diagnosed at EF of 40%, currently around 50-55%.

And I am on similar medications, Coreg, same dose, and Altace instead of Diovan.

And I plan to take my medication for the rest of my life, as I know if I go off of it, I am risking major problems. Studies have shown that those who stop taking their medications usually develop problems later on -- like requiring heart transplants... or dying.

Perhaps you could reduce your dosage of Diovan, if your doctor agreed to it (and your heart was nice and strong), but I'd never recommend completely stopping. Since you have no major side effects, why risk it? As for Coreg, we are already on what is considered 'half-doses'. Any lower, and you won't be getting much benefit from it.

[mike95765]

Thanks for the reply. My CHF may be idiopathic also, each of my doctors has differing opinions on cause.

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My current side affects include fatigue, lack of concentration, breathlessness, etc. These are mostly minor but still a concern. If it is the meds I'd prefer to eventually stop them instead of facing life-long medication.

Basically, my hypothesis is that if my heart is functioning at 100%, ARB's and Beta blockers are not contributing to the heart's efficiency, only preventing further stress and damage. Assuming you have dealt with the underlying cause of the initial damage and the muscle has recovered, the drugs become unnecessary?

Or, am I completely missing the issue?

[namelessme]

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the study basically followed a small group of heart failure patients who, via medication, got their ejection fractions normal. They dropped their medications, and several continued to do well... while others had a relapse. Those who relapsed ended up in worse shape than they were at previously.

Originally Posted by mike95765

My current side affects include fatigue, lack of concentration, breathlessness, etc. These are mostly minor but still a concern. If it is the meds I'd prefer to eventually stop them instead of facing life-long medication.

Basically, my hypothesis is that if my heart is functioning at 100%, ARB's and Beta blockers are not contributing to the heart's efficiency, only preventing further stress and damage. Assuming you have dealt with the underlying cause of the initial damage and the muscle has recovered, the drugs become unnecessary?

Coreg is probably causing some of those side effects, and/or it's your heart. Your symptoms aren't so different than mine. Your hypothesis is interesting, but I'm not sure there is a way to determine if it's correct or not, without gambling with your life. If your heart is, say, functioning at an ejection fraction of 60%+, how do you know it's not Coreg and the ARB keeping it there?

I suppose you'd need to find the exact cause before considering dropping the medications. In my case, the doctors state viral or genetic, although there is no way to prove those are the causes. All they can prove is it isn't ischemic related. Cardiomyopathy could also be mitochondria related, where our little heart engines aren't working quite right.

If you find an exact cause, and your doctor treats the cause, then maybe stopping medications would be okay. Such as, if the cardiomyopathy was caused by mercury poisoning, alcohol abuse, or something similar. Get rid of the mercury poisoning, stop drinking, etc. and your heart is all okay again, no need for medicines.

But if you can't determine the exact cause, I think it's risky to stop the medicines. Since your ejection fraction went down to the 15%-20% range, you may have permanent heart damage. I don't mean to say your heart will never work right again, but on a structural or cellular basis, certain things might be a bit off, even after you get your EF up to normal.

At most, maybe speak to your doctor about changing your medicines, if you think the side effects are too overwhelming, Although the Coreg alternatives (Toprol XL, Zebeta), might not work as well as Coreg does.

[mike95765]

Thanks for the replies, I'll have to do some further research.

This is my first serious health issue and I'm amazed at the amount of guesswork and lack of precision in the field. They don't know what caused mine either although I was a medium to heavy alcohol user for a short time, nothing close to what the studies have shown would be needed to induce cardiomyopathy. Still, one doctor points to that, my second cardiologist says viral, my GP has another opinion. It's all educated opinions. I do understand what you are saying and appreciate the feedback, better a few side effects than to die trying to prove a point.